Sorry in advance for long post.

[Tilley-2]

I now believe I have rls after reading some of your post, about 10 yrs plus ago I had a very stressful time in my life, and after a fall off some steps which hurt my lower back I started what I called jolting, it came from my waist mostly, no one seemed to know what is was, it caused terrible insomnia. I had at the time had a relatively recent diagnosis of hypothyroidism and muscular pain issues which was put down to fibro. I was given trazadone. Which calmed me down to an extent but I am sensitive to meds and often could of done with an increase. Over time the jolts lessened and returned less and less. I took myself off trazadone a couple of years ago, the withdrawal was awful. Then a year ago I fell and hurt my knee this kept me awake with pain and anxiety increase dramatically. The jolts appeared again, it freaked me out and there are times when they get violent and my lower body takes off. It also aggriviates my lower back and will carry on till dawn. I have been given temazapan now I also tried diazepam, kalm, phernergan, cbd, I went to the pain specialistt who usually gives me cortisone inj but now I have osteoporosis so its banned. He tried me on 300 mg gabapentin for jolts,but it wiped me out, I was a zombie. I use a lidocaine patch in the daytime on the area of my lower back in the day and volterol cream at night. I can’t take them orally As I get gastritis, and i think this last year of stress has started to inflame my bowels. I’m so sorry I just don’t know what to do or take, it seems I may be taking the wrong things and making things worse for myself, but I need sleep. Im at my wits end.

[Hidden]

Wow, that sounds awful but not really like RLS, (not saying that it isn't mind!).

Have you checked out the RLS site?

rls-uk.org/diagnosis

That should point you in the right direction.

Best of luck.

[Hidden in reply to Hidden]

Sorry you have these problems, but agree, it doesn't really sound like RLS.

Did you ever have an MRI or simple X ray of your spine after your fall?

If the jolting occurs when you're lying down then it may be a combination of your position and spinal damage placing pressure on motor nerves, as well as sensory nerves (which cause the pain).

You paint a complicated picture. Trazadone has a very different way of working to Temazepam and Diazepam which are both benzodiazipines. These can be used short term for insomnia, but lose their efficacy in a relatively short time. Diazepam is also used as a muscle relaxant. Kalm, a herbal remedy, Phenergan and CBD are alll very different.

I'm not sure about why you had cortisone. Gabapentin is an anti-epileptic drug that can be used to treat nerve pain. (and RLS).

All in all, it's not clear what your main problem is. Or is it several unrelated problems that can't be treated wth ONE particular medicine. Pain, anxiety, jolting and insomnia all chase each other around and add to each other. If you can truly identify any one underlying cause for the pain/jolting then that would be very useful.

Have you ever seen a neurologist? This may help clear up the confusion. Some medical conditions are similar to other medical conditions and it's sometimes easy for doctors to confuse one with another. Specialists tend to interpret signs and symptoms as indicative of a condition they normally deal with. I once was persistently mis-treated for months for a condition which was mis-diagnosed by one specialist. When I saw another specialist, different speciality, he diagnosed it correctly in 5 minutes!

I hope this helps

[Tilley-2 in reply to Hidden]

Thank you for replying.

I think a neurologist may be a very good way to go. I have had enough and have had no real answers, the trouble is once there is a fibro diagnoses everything is put down to that.

[Tilley-2 in reply to Hidden]

Hi I did reply send you an reply yesterday, but I’m not sure where it’s ended up! Some of the symptoms may or may not fit, i believe my grandmother had it but know no more that that. It usually starts at night as I am trying to go to sleep. And before it got bad I could curl up into a ball and after a while it stoped. Looking at all the reply’s I think it’s sensible to explore the neurology route.

[Madlegs1]

It sounds very like some form of Parasthesia- nerve damage , rather like sciatica, where a nerve gets pinched or rubbed in the spine , due to some shock.

This can cause intense pain and burning sensations in whatever part of the body the nerve is servicing.

I get it in my left thigh, resulting in being unable to sleep on that side, due to pressure.

A chiropractor may be able to help- but only go to a recommended one.

Cheers.

[Parminter]

Tilley-2, have you had any scans or X-Rays of your lower spine? Damage to the nerves in the spine can cause misery in all sorts of places, and relentless pain.

All the pain-killers will not help in the end, you must find first causes.

You need a neurologist or neurosurgeon - although a good chiroprator or physiotherapist could also do the investigations.

[Tilley-2 in reply to Parminter]

Thank you for your reply. I did have an mri not all that long before the fall, But not since, the mri wasnt very clear although it should of been. The rheumotogist sent me for one, I had gone due to possible Sjogrens, He saw I had back issues and decided to put me down for one. It showed bits of inflammation and a possible rhumani leaision on L5, but bloods markers where negative and the jolt problem is lower down. I also didn’t know until very recently that my spine had he level of osteoporosis that it has now -3.1. In the past I have had some cortisone injections in SI joints mostly, so they won’t of helped the osteoporosis. I will be looking into the Neurologits route To see if it’s a nerve issue. I have noticed it can be worse if i have been Iying. flat on my back especially if the surface isn’t soft, and if I have been sitting on a hard chair. I need some answers to why I get these jolts, I can’t keep on just taking pills without a proper diagnosis.

I really appreciate everyone's thoughts Ive been so tired it’s been hard to think straight and your replies have certainly helped me focus.

[robert1957]

hello Tilley-2

please research magnesium deficiency and symptoms of magnesium deficiency also benefits of vitamin d3 k2mk7 good luck

[Tilley-2 in reply to robert1957]

Thank you for your suggestions.

Those vitamins are really good and I am supplementing them already. I started a year or so ago for my thyroid and bones but obviously long enough to reduce the awful dexa result.

[robert1957]

hello Tilley-2

if you can research an author called Anthony William he has written a number of books on mystery illnesses and how to heal by eating the right foods, goodluck